Abstract
BackgroundParents of children with chronic illness have reported decreased psychological and physical quality of life (QoL) relative to parents of children without such illness, which may be associated with the extent of complexity involved in the caregiving role. Given that coping strategies have been reported to influence QoL, our goal was to synthesize existing research about the association between coping strategies and QoL in caregivers of children with chronic illness. We were particularly interested in whether coping strategies may mediate the association between caregiving complexity and QoL, or may modify the association.MethodsWe developed an electronic search strategy to identify relevant citations in Medline, EMBASE, PsycINFO and CINAHL. Two reviewers independently assessed retrieved citations against pre-specified inclusion criteria in two stages of screening. One reviewer abstracted data on study characteristics, methods to address confounding, measurement tools, risk of bias, and results with respect to associations of interest. A second reviewer validated extracted data. We summarized results narratively.Results2602 citations were screened and 185 full-text articles reviewed. The 11 articles that met inclusion criteria addressed 5 diseases and included a total of 2155 caregivers. Ten of the 11 included studies were cross-sectional. We identified some evidence that coping was associated with QoL: in three studies, coping strategies considered to be adaptive were positively associated with psychological QoL while in one study, maladaptive strategies were negatively associated with psychological QoL. Only two studies considered coping as a potential mediating variable in the association between caregiving complexity and parental QoL, with inconsistent findings and challenges in interpreting cross-sectional associations. No studies considered coping as a moderating variable. The variability among instruments used to measure key constructs, particularly coping strategies, made it difficult to synthesize results.ConclusionsWe found that coping strategies may be associated with psychological QoL among parents of children with chronic illness. We also identified important research gaps related to the consistent and clear measurement of coping strategies and their prospective association with QoL. Understanding how coping strategies are associated with QoL is important to inform the development of interventions to support families of children with chronic illness.
Highlights
Parents of children with chronic illness have reported decreased psychological and physical quality of life (QoL) relative to parents of children without such illness, which may be associated with the extent of complexity involved in the caregiving role
Hamama-Raz and Hamama [60] used the 20 item Perceived Ability to Cope with Trauma Scale (PACT) [66] to measure coping strategies
Future studies that focus on coping and QoL in this population should seek to better understand the conceptual underpinnings of this construct. In addition to this challenge related to conceptual and measurement clarity/consistency, a second important issue across the studies we reviewed was the lack of prospective research: all but one of the studies we reviewed used cross-sectional study designs, making it difficult to determine if caregivers who use adaptive coping mechanisms are healthier as a result of their improved coping ability or if caregivers with greater QoL are able better able to respond to their environment due to their improved health
Summary
Parents of children with chronic illness have reported decreased psychological and physical quality of life (QoL) relative to parents of children without such illness, which may be associated with the extent of complexity involved in the caregiving role. Given that coping strategies have been reported to influence QoL, our goal was to synthesize existing research about the association between coping strategies and QoL in caregivers of children with chronic illness. The number of children with diagnosed disability is likely to increase over time as children with chronic illness are living longer and healthier lives [4,5,6]. Many children diagnosed with illnesses that were once considered severely life-limiting, such as cystic fibrosis or muscular dystrophies, are living into adulthood [7, 8]. Parents of children with chronic illness are primary nurturers in their children’s lives and key members of their children’s health care teams [8]
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